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ASB Research Presented at DC Health Communication Conference!

Co-author Dr. Adebanke Adebayo presented our recent research about the ASB at the DC Health Communication Conference.

Our research topic:

Amyloidosis Speakers Bureau (ASB) patient narratives: Impact on information seeking behaviors among medical students

Background: According to Newman-Toker, et al. (2023), misdiagnosis–including missed, delayed, and wrong diagnoses–leads to an estimated 371,000 deaths and 424,000 permanent disabilities in the United States each year. In response to these alarming statistics, the Centers for Disease Control and Prevention (CDC, 2024), released a diagnostic toolkit that contains sections for patients, families, and caregivers. One difficult-to-diagnose disease is amyloidosis, a protein-misfolding disease. It’s hard to diagnose in part because it manifests in a variety of organs and its symptoms are similar to those of many other diseases, symptoms such as fatigue, shortness of breath, etc. In this study, patient engagement was highlighted as crucial to a correct diagnosis. Using Amyloidosis Speakers Bureau (ASB) patient educator presentations, this study explores the impact of patient educator presentations on information-seeking behaviors among medical students. The theoretical frameworks used to support this study are narrative and persuasion theories.

Methods: The Amyloidosis Speakers Bureau (ASB) arranges for amyloidosis patients to speak about their diagnostic and treatment experiences with U. S. medical students. Using a survey of U.S. medical students (N=1,634) and ASB health information mailings (N=50), we hypothesized that patients’ narratives about their diagnostic and treatment journeys would positively impact medical students’ information seeking behaviors about this disease.

Results: Participants who listened to an ASB patient speaker had significant higher means on information seeking behaviors, including the voluntary decision to sign-up to receive additional information from the ASB mailing list. Similarly, participants who listened to an ASB patient speaker were significantly more likely to open email information about amyloidosis–52.74%, than were people who received emailed health information from other organizations using distribution services like Mailchimp–20%.

Conclusions: Listening to a patient’s narrative presentation was associated with a high open rate for periodically emailed information on amyloidosis research by medical students who signed up to receive this information. We believe this study adds to the growing call-to-action to integrate patient narratives into medical curricula through platforms like the ASB. Future longitudinal studies should  be conducted to explore the outcomes reported in this study over longer time frames.

An Unexpected Benefit of Adding the Patient Voice to Medical Education—Train Providers to Be Better

The Amyloidosis Speakers Bureau (ASB), founded in 2019, arranges for ASB patient educators to speak about their diagnostic and treatment experiences with medical students. In 2023, we published a study to understand the impact from the addition of the patient voice to didactic medical education. The study concluded that listening to an ASB patient educator’s narrative was associated with positive attitudes toward communication with patients, interest in acquiring and applying knowledge of amyloidosis, and humility about diagnosis. Post-publishing, continued analysis of the presentation feedback made it clear that another benefit was occurring. During the ASB presentations, questions were repeatedly raised about what guidance the patients might offer to help these budding doctors become better providers and how they could improve their relationships with patients. Their inquiries had nothing to do with amyloidosis and were relevant to every interaction and all diseases. These future providers wanted to be better and wanted the patient’s perspective to help get there. Assessing their questions revealed an unexpected benefit from the patient presentations.

LINK TO ARTICLE

Patient Panel Provides Medical Students Insights into Living with a Rare Disease

The Chicago College of Osteopathic Medicine (CCOM) held a patient panel about amyloidosis, a rare disease where abnormal proteins build up in different tissues and organs. The patient panel was an opportunity for medical students to increase their awareness of amyloidosis and hear a patient’s experience living with the rare disease. According to the Amyloidosis Foundation, there are less than 200,000 people in the U.S. who have been diagnosed with amyloidosis.

George Borrelli, D.O., Chair, Clinical Integration, CCOM, welcomed the audience to the patient panel and discussed the importance of the supplemental learning opportunity for the students. “It gives you an opportunity to not only learn about a disease, but to get an account from a patient who has actually gone through the situation.” Dr. Borrelli elaborated, “The earlier this disease is diagnosed, the better the outcomes are. For so many years, this disease has been an enigma, difficult to diagnose, and slipped through many clinicians’ fingers.”

Ozzie Giglio, who is living with amyloidosis, visited Midwestern University and shared his experience with the rare disease. Ozzie is a patient educator with the Amyloidosis Speakers Bureau.

Medical student Kelly Brake (CCOM ’27) said, “It was nice to hear a patient account during our coursework years. It’s a good reminder of the challenges that patients face in healthcare.” She also expressed her gratitude for CCOM’s enrichment of classroom learning with experiences like this event.

The link below is to the full article published by Midwestern University.

https://www.midwestern.edu/news-stories/patient-panel-provides-medical-students-insights-living-rare-disease

ASB Participates in Rare Disease Day 2024!

The Amyloidosis Speakers Bureau was thrilled to participate on Rare Disease Day! One way we were part of the celebration was for our patient educator Sean to share his journey at Keck Graduate Institute’s Rare Disease Awareness Fair.

 

The Story Behind the Amyloidosis Speakers Bureau

The story behind the Amyloidosis Speakers Bureau (ASB) is very special. In this video we hear where the original concept of patients presenting to medical students came from — Dr. Gordon Huggins of Tufts University School of Medicine. Hear how he was “auditioning” his patients to speak to his class of second year cardiovascular medical students, and then he met Charolotte Raymond. It was an experience so meaningful it inspired Charolotte to conceptualize a program whereby patients would educate medical students across the country. She partnered with Mackenzie’s Mission in 2018, where together we took her original concept and collectively developed it into the Amyloidosis Speakers Bureau. The ASB was officially founded February 1, 2019.

Humanizing Medical Education: Beyond Bullet Points

The content of medical education is appropriately clinically centered. The delivery of this content remains relatively unchanged over the decades – typically taught by medical professionals through lectures, PowerPoint presentations, and patient case studies. We posit that there is an essential missing component: the patient voice. During the didactic years, medical students rarely hear from patients about their symptoms, diagnostic journey, emotional management, support and resources, and relationship with the medical community. By humanizing medical didactic education, patient insights can offer an impactful and durable education that complements traditional didactics, developing what we believe will be better and more empathetic future medical practitioners.

Research presented at NCA Conference!

Co-author Dr. Adebanke Adebayo presented our published research about the ASB at the 109th annual conference of the National Communication Association. She was a panelist for the “Health Communication Data Blitz: Patient-Provider Communication and Care” session.

 

 

 

 

 

 

 

Standing room only!

 

Reuniting three of the co-authors (left to right): Dr. Kathy Rowan, Dr. Adebanke Adebayo, and Deb Boedicker.

 

Click on the title below to read more about our research and find a link to the PubMed peer-reviewed paper.

https://mm713.org/blog/published-research-evaluating-the-amyloidosis-speakers-bureau/

ASB Presents to 1st Physician Assistant School!

While our primary focus at the Amyloidosis Speakers Bureau (ASB) is on medical school students and internal medicine residents, we are very open to presenting to other groups that are aligned with our objective of closing the education gap within the medical community.

In early 2023, a Tufts University School of Medicine student in the PA program learned of our upcoming May presentation to the medical students. Conversations ensued with the medical school course director, PA program director, and Mackenzie’s Mission regarding the possibility of the PA school class joining the medical school class for the ASB presentation. Success!

So in May 2023, the ASB presented to 200 Tufts University School of Medicine medical students and 50 physician assistant students!

The experience and feedback from the PA students to their program director was so positive that all have agreed to make this an annual event within their curriculum!

 

ASB presented at NORD’s Students for Rare Summit

On October 15, 2023 ASB patient educator Sean (accompanied by caregiver/wife Robin) shared his journey with hereditary ATTR amyloidosis at the NORD Students for Rare Summit in Washington DC. These student leaders from medical schools across the U.S. had the special opportunity to learn about hereditary amyloidosis and the patient experience through Sean’s story.

 

 

ASB Launches “Expert Insights Into Amyloidosis” video series

The Amyloidosis Speakers Bureau (ASB) is an initiative sponsored by Mackenzie’s Mission to close the medical education gap about this disease. The core of this initiative is a live presentation, where patient educators share their personal journey with amyloidosis — from symptoms, through diagnosis, treatment, and life today battling this rare and incurable disease. Following each presentation the attendees are invited to receive ongoing information about the many facets of the disease. We are pleased that many have accepted.

To expand the body of information sent to those interested, earlier in 2023 we designed a new series of short videos recorded by our ASB advisors, the vast majority of whom are practicing physicians. The topics are varied, discussing symptoms, diagnosis, treatments, clinical trials, multidisciplinary care teams, and racial/ethnic inequities of both AL and ATTR (hereditary and wild-type).

In our Education Hub you can select to view all of our Expert Insights, and be sure to sign up for our newsletter to stay abreast of future releases.

This series offers an extraordinary education opportunity for the medical community, and we believe the patient community will also find this series valuable.

Here’s a LINK to the website page.

 

Enjoy!

 

 

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